Energetically Enduring Pandemic Restrictions:
SCI Researchers Proceed with Studies
Researchers at the University of Michigan continue to work remotely to forward their various studies during the COVID-19 pandemic. We wish to thank all study participants for their continued interest in these studies. Here are brief updates of these projects.
Validation of the SCI-QoLBDS: Cross Cultural Comparisons and Clinical Outcomes
Measuring quality of life after spinal cord injury (SCI) is an important area of work as it can guide future treatment recommendations and the development of disability policy affecting benefits and resources available to those with SCI. This study is evaluating whether Spinal Cord Quality of Life Basic Data Set can be used similarly across languages and cultures. We have completed analysis that found that the Data Set is reliable across cultures. We are now analyzing data about how people define quality of life across countries and cultures. This study is funded by the Craig H Neilsen Foundation. A paper by Tate and Forchheimer in 2014 reviewed the cross-cultural issues related to quality of life after SCI, entitled Review of Cross-Cultural Issues Related to Quality of Life After Spinal Cord Injury. This was published in Topics in Spinal Cord Injury Rehabilitation in 2014 in Volume 20, Issue 3, pages 181-190.
The Effects of Gentamicin Intravesical Installations on Decreasing Urinary Infections in Patients with Neurogenic Bladder after SCI: A Clinical Trial
This clinical trial, funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR), evaluates whether using Gentamicin Instillations can reduce the frequency of urinary tract infections (UTIs) among adults with SCI, thereby also improving their quality of life and community participation. The investigators are from both the Department of Physical Medicine (Tate, Rodriguez and Forchheimer) and the Division of Urology (Cameron) at Michigan Medicine. This trial is monitored by the Michigan Institute for Clinical and Health Research and the Food and Drug Administration (FDA). Currently two participants are enrolled in this study. Recruitment has been temporarily halted due to COVID-19 related precautions, but is expected to restart this summer. If you are interested in being part of this study and have a minimum of 3 UTIs per year, and are not currently on gentamicin, please contact firstname.lastname@example.org.
For information on bladder health and management after SCI see this link at the Model Systems Knowledge Translation Center (MSKTC) https://msktc.org/sci/factsheets/bladderhealth
Neurogenic Bowel and Bladder Management after Spinal Cord Injury
People with SCI frequently make decisions about how to address complications related to bowel and bladder management such as incontinence. We are interested in knowing how civilians and veterans with SCI make these decisions and their level of satisfaction with their decisions outcomes. To address this question, we have interviewed 61 persons with SCI. Preliminary results suggest that successful outcomes result from a combination of shared decision making, access to resources, and positive attitudes toward seeking solutions for problems. Decisions are also made based on one’s value system and need for independence. The project has completed all individual data collection and is now preparing to conduct a series of focus groups. Funding for this project comes from the US Department of Defense. It is being conducted in partnership with the Ann Arbor VA and Dr. Lisa DiPonio. We thank the Paralyzed Veterans of America for assisting us with recruitment of veterans. We hope to be able to offer recommendations to improve current clinical practice guidelines for bladder and bowel based on our participants’ feedback and impressions.
Reinventing Yourself After SCI
This is a collaborative study, being conducted by Craig Hospital in Colorado, Kessler Rehabilitation in New Jersey and the University of Michigan to examine the effects of an intervention designed to increase SCI specific and general self-efficacy beliefs, enhance emotional wellbeing, increase resilience and improve participation in society for people with SCI. Participants are randomized into one of three groups: 1) a group that participates in six in-person training sessions and will also receive written and on-line resources; 2) a group that receives the written and on-line resources; and 3) a group that only conducts the study’s assessments. Including follow-up assessments, participation in the study takes about one year. Over 130 people with SCI have already participated in this program across the three sites. At Michigan, have conducted these interventions twice and are preparing to conduct it for a third time, hopefully this Fall. Our study coordinator is Suzanne Walsh and she is currently recruiting. If you are interested in learning more about this study, please contact Suzanne email@example.com or (734) 936-6023.
Tom Hoatlin (left) and Sunny Roller (right) lead this study's 6-week in-person intervention.
Developing a Patient-Centered Measure of Caregiver Relationships
This study, funded by the Craig H. Neilsen Foundation, is developing a new measure of the quality of the relationship that people with SCI have with their caregivers. This measure should be useful to people with SCI, as well as to both clinicians and agencies that hire caregivers, as well as to researchers. Earlier, this study gathered ideas from people with SCI, caregivers serving this population, as well as clinicians, in order to build a large pool of potential items. Staff are now conducting interviews with adults with SCI who receive caregiving, nationwide. Interviews take between 45 – 75 minutes to complete. If you are interested in learning more about this study, please send an email to: MF-Neilsen@umich.edu.
Healthy Aging, Environment and Spinal Cord Injury
Adults who have SCI may face different aging challenges than those adults without SCI. The purpose of this research study, funded by the Craig H. Neilsen Foundation, is to understand how the environment and neighborhoods affect the health of people aging with SCI in Michigan and surrounding states. While most studies on aging focus on the problems that people experience as they age, this study is also looking at the factors that promote health as people age with SCI. The research team is conducting phone surveys with participants who are over the age of 45 and have been living with SCI for one year or more. Participants are compensated for their time. If you are interested in learning more about this study, please send an email to: firstname.lastname@example.org.
The Wireless Motility Capsule Neurogenic Bowel in Spinal Cord Injury
Gastrointestinal issues (GI) are a problem for many people with SCI. This study investigates the use of a new technology, the Wireless Motility Capsule, or SmartPill. Participants swallow the SmartPill and as it goes through the GI tract, it provides information about how long it takes for food to flow through the different components of the GI tract, as well as the pressure in the GI tract. We hope the results from this study will provide new information about the GI system after SCI. The principal investigator for this study is Dr. Gianna Rodriguez of the Department of Physical Medicine and Rehabilitation. It is being funded by the Craig H. Neilsen Foundation. Participation involves completing a diary of your bowel movements and medications at home for up to 10 days as well as 2-4 visits to the University of Michigan where participants are given the SmartPill and complete several physiological tests. If you are interested in learning more about this study, please contact the study coordinator, Ellen Wolgat, at 734-936-1977 or by email at: email@example.com.
Phenomenology of Chronic Pain After Spinal Cord Injury: Experience, Adaptation, and Quality of Life
This study, funded by the Craig H. Neilsen Foundation, is working to provide SCI clinicians and researchers with new knowledge that better integrates the social dimension of persons living with and trying to manage SCI-related chronic pain. Questions that we are addressing include: How do those with pain navigate their daily lives to minimize the impact of their pain? What role to friends and family, activities, and other social interactions play in helping cope with chronic pain? How would these outcomes help healthcare better understand SCI-related chronic pain and creative ways to manage it? This study included interviews as well as in-home observations of people going about their lives while in pain. All of our data has been collected and we are in the process of analyzing it now. We hope to provide some useful findings in the coming months.